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rogue0703 in crampingmystyle

endo rant


I'm soooo sick of this desease.... endometriosis.... even the name is confusing. it's long, and i've heard it pronounced so many different ways as people tried reading it to say it.
the treatments aren't much better.... there are so many, and they all do different things, and there are no promises that any of them will help an endo survivor (yes we are survivors... we may only survive with the ability to breathe some days.... we may not always live to the fullest, but we are still alive). some actually make women worse instead of better, i had that happen wiht one of my treatments.....
i'm sick of having my self esteem constantly low. i'm sick of being depressed so much. i feel like a failure as a wife, daughter, sister, friend, and whatever else, because i have so many times where my health will suddenly fail, or i'll have an "endo attack" where i have trouble getting out of a chair, and i let someone down. i'm tired of feeling like i have less worth as a person because i can't constantly be spending time helping others, or hanging out, or even doing house work. i'm sick of having a messy house, or car, or work area because i have so much trouble getting out of my chair, or out of bed.
i'm sick of waiting for something else to be stolen from my life. friends, money (that's a big one), health, mobility, whatever else... it's affected all of those and more. i'm sick of wondering what's next, and knowing that i can't do anything about it other than pray and think positively, because even pain pills only work so long.
I'm tired of coming home early, and stressing about whether i'll make all the hours i need to at work, because i'm unable to think, let alone move. i'm tired of ignorant people - some of whom i can't even share my situation with because it can get me into trouble, due to others lack of knowledge - and i'm tired of said ignorant people asking if it's contagious, or if i'm sick with the flu or something of that nature when i'm emotional or sick to my stomach due to medications/treatments that don't even all help.
I'm absolutely annoyed with being an emotional basket case, all due to an illness that only has a name - no cause is known, no treatments are guaranteed to help, and the best chance i have is a doctor up in oregon - if my other doctors will even cooperate and give me my records so i can go see him.
i'm frustrated by the lack of public awareness of this disease... especially when most people i talk to (even family members i haven't seen in years) all have been effected by endo at one point or another, either themselves, or through a friend, yet there's no funding taking place for research.
I'm frustrated by the fact i'm still a science experiment, even now that i have a diagnosis. i'm tired of not knowing what the effects of meds i'm on today will be on my life 30 years from now. i'm tired of having doctor's push medicines on me saying "oh this will clear it all up" ... especially the doctors who i seem to know more than when it comes to this illness.

i'm tired of being tired, i'm tired of constantly trying to boost my immune system, i'm tired of having my immune system fail me constantly.



i know this illness has added to my life, in ways most people don't understand.... at least not the way it's added to me personally. it's added compassion - even if that doesn't show very well because i get so grumpy and tired from pain. it's added strength.... even if not physically. it's added determination - i'm now determined to take advantage of good days. it's added patience... i have learned to relax more, even when i'm stressed ( what a oxymoron or whateverl ol) and i've learned to understand when someone else can't move as fast as i'd like, and i have learned to be patient with myself. i've learned more about love by watching how Marc is with me, even when he is frustrated by me, and my illness. i've learned forgiveness, both accepting it and giving it. i've learned that yes, beauty does, in fact, come from pain. maybe not physical beauty, but a beauty that shows from within - even if it doesn't show through all the time. i've learned things (definitely) don't always go our way, or according to our plans - i'd known this before, but never understood it as fully as i do now. i've learned that sometimes, the only way to truly understand someone else's pain is to go through it yourself...and no amount of talking to people about personal pain will get some to understand, though some can truly relate - and the people who do their best to understand and relate are the ones worth keeping around.
some days i would definitely (selfishly) trade all of those lessons for my health back and my naivety.







x-posted to a couple endo comms, my lj and my myspace

if this didn't all seem connected - i'm sorry... it's been a really long day and i'm sick (again). i should have been in bed an hour ago, but unfortunately i don't seem likely to meet my friend sleep for at least another 30 mins.

Comments

feel like a failure as a wife, daughter, sister, friend, and whatever else

i believe you have posted exact words from my journal and from my mind.

i did many months of being the "medical mystery". i understand completely.

December 2006

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